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Saturday, October 31, 2015

So I realized that I haven't written a single update for the month of October and now the last day of the month is here. I think my last electrophysiology appointment really got to me emotionally. I always struggle after those appointments to accept that this won't get better and that I'm out of symptomatic treatment options for my autonomic dysfunction. I also found out that I've crossed over into a percentage of ventricular pacing (pacing for heart block) that puts me at increased risk of heart failure.

It was a lot to take in and I shut down. I've been keeping my mind blank. I'm living every day minute to minute and not thinking in advance because I don't want to let depression take hold. A few weeks ago I also lost Octreotide (the medication that's allowing me to eat without severe drops in blood pressure) and stopping that cold turkey almost sent me into an autonomic crisis worthy of the ER. I have since resumed Octreotide thanks to prompt action on the part of my cardiologist. I definitely feel better when I can actually eat and drink like a somewhat normal person.

In the midst of this, I came across a book called Gone in a Heartbeat by Dr. Neil Spector. Dr. Spector is an oncologist at Duke who was diagnosed with Lyme disease. His heart manifestations progressed to the point of requiring a heart transplant. He now seems to be doing well health-wise.

The book was scary to me at first. Many of his experiences with his heart were nearly identical to mine. Like me, he is also an avid runner. He runs often to relieve stress. His heart problems began with just tachycardia and skipped beats. His doctors blamed it on stress and didn't take him seriously. Eventually he caught an episode of VTACH and received an ICD/pacemaker. Soon after he started to develop heart failure. Dr. Spector was diagnosed with Lyme and treated with IV antibiotics (something I've never had), but surprisingly, the IV medications did not help in terms of his progressing heart damage. His cardiologist tried a biventricular pacemaker; that's what they will try with me if my ejection fraction has gone down next month. The biventricular device didn't help either. He then went under 10% heart function and needed a transplant which created another slew of complications.

Although this book does not delve into detail about Lyme disease, Dr. Spector does a great job of describing what chronic illness patients go through emotionally.......particularly those with heart arrhythmia's. The fear, the depression, the frustration about not having a curative treatment. He included a lot of insight from his unique perspective as both a physician and a patient. He mentioned how he used to hate when his colleagues would discuss patients that "failed" treatment. He felt like it puts the blame on the patient. That's 100% true. I constantly feel like a failure when medications don't work for me.....like I should be doing something to make them work. He also spoke of how doctors would abandon cancer patients because they couldn't handle caring for people who would not get better. I think that happens extremely often. I've been abandoned by multiple doctors. Most notably my first LLMD. It's a horrible feeling. Not only does it make the patient feel like a failure, but it makes them feel like there's no hope and they should just give up.

Dr. Spector also discussed the point in his life where he was depressed and didn't want to go on anymore. He fully understands the emotional toll that serious illness takes on people. In addition, he talks about many occasions in which he as a physician was not taken seriously when he had a medical concern. His doctors repeatedly blamed his symptoms on stress. One time a nurse completely disregarded a low battery alert coming from his ICD. As a patient, I've found that my concerns have been downplayed or ignored more often than not, but I would never expect doctors to treat other doctors the same way. I assumed doctors had it easier when they are the patient. I thought their colleagues would treat them with a higher degree of respect than an average patient with no medical background.

I really enjoyed reading this book. While it presents a case of severe and unusual heart manifestations due to Lyme that could create anxiety in some people, I see it as a realistic account of what people with serious illnesses go through physically and emotionally. I don't think I've ever read a book that depicts these factors so accurately.